february: in numbers

Happy March! After a great day at goalball (my arm hurts from throwing! :]) and attempting to make things out of loom bands again (I mostly failed, I finally made a pencil grip), I’d consider this a strong start. Looking back on February, I’m going to try to one-up [at least!] all these numbers during March. It has more days, after all…

Blog posts: 8 (January – 11.)

Steps: 103,648 per intraday Fitbit exports; 120,915 per Fitline (these should be using the same data?!); 106,708 per Zenobase. (What did I pay for Fitline, then?!) Regardless: more movement needed. (Averaging 44 fairly active minutes per day, though. Cool.)

Tracks: Added to the running 2015 playlist: 4 (maybe 5).

Pictures taken: 467

The amusing thing is, it seems most of the sites I have set up to give me stats on such things… do not send those reports on the first of the month if it is a Sunday [or I just have things set to start the week on Monday. So… stay tuned for updates.

103,648

my chronic disease secret

Most of the time, I try to be of the voice that life with chronic disease can still be awesome.

But that doesn’t mean chronic disease doesn’t suck.

A couple years ago, my friend Chris launched My Diabetes Secret. An innocent question from him lead to a discussion, and then… to this:

My Chronic Disease Secret.

“A safe place to share your chronic disease secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.”

I like this a lot.

Huge props to Chris for investing his time in setting up these projects.

Share your story. Even if nobody knows it’s yours.
Or if that’s too hard, share. Just read, even.
And keep going. If you need them, there are resources, people, who can help—even if you just want to type.

I hope you’ll check it out.

“thank you for being so patient”

This morning, I was helping (or not helping, as the case may be) with the set-up of a new website. Two provinces away on the phone was the doctor I was “assisting” to navigate a new WordPress install.

[Note: She ended up calling tech support, so I can’t say I was all that helpful ;).]

During this call, though, she said “Thank you for being so patient!”

While this was in reference to the understandable frustrations of technology and distance (1400 kilometres is a bit of a distance to lend support on a host I’d never used!), perhaps it should be used in different patient-doctor scenarios.

How many times has your doctor (as a patient)/have you (as a physician) entered the room a) late, b) visibly stressed, c) without having consulted your notes first, or d) all of the above?

In any of these situations, I’d much rather hear “Thank you for being so patient,” over “Sorry”. Being thanked values my time, energy and investment into being a patient. Apologies mean little when they’re overused: apologize when you, as a healthcare provider, have screwed up; when something has happened and you could have done better, acknowledge it! Help reinstate the value of being truly sorry—we can tell when you’re being sincere, anyways.  Chronic patients realize that these things—being late, stressed, needing a second to check our charts—are facts of life in the healthcare system. It’s why I am reasonably patient (and pleasant) as much as I can be when dealing with my medical team, and make the effort to thank every single person I encounter in the hospital or clinic whenever possible: I appreciate the work you do, that these professions do not have nearly enough resources, and that everyone taking care of me has far more than me to think about. I want the people caring for me to know that.

And just as I, as a patient, appreciate the work that healthcare professionals do, I’d much rather the apologies be saved for when they’re truly needed, and instead, my experience be recognized and appreciated.

Thank you for being so patient,” works for me.

guest post! | dyspraxia and non-verbal LD: Ariela’s story

While I frequently share the frustrations (and joys) I’ve had with being diagnosed with learning and attention issues in my 20s, today’s guest post by Ariela highlights that early diagnosis can be both a good thing—in terms of intervention—and a bad thing—in terms of self-esteem—as she shares her story of living with dyspraxia and nonverbal learning disability. (Note that Ariela uses the term learning disorder rather than disability—they are the same).

In part, Ariela mentions “rediscovering” the part of her [self-]identity that is formed through her dyspraxia and LD. I found this really interesting, and it’s definitely a topic I’d love to hear more people exploring.

Thanks for sharing your story, Ari! 

———-

Over the past few months, I’ve enjoyed rediscovering my dyspraxic identity, reading about others’ experiences, and finding a community I can relate to, though awareness regarding dyspraxia and Nonverbal Learning Disorder is only in it’s early stages. I feel learning disorders are informally associated with academics, but Developmental Dyspraxia has impacted me greatly during my early childhood and continues to affect physical and manual tasks which are often overlooked or assumed.

I was pretty severely oxygen deprived at birth, and missed several milestones and did not walk sturdily and unaided until I was three. I had trouble keeping up with other kids on the playground and maneuvering scissors and various writing utensils. In grade school, my most evident problems were my handwriting and inability organizing my workspace, as well as my incompetence in mainstream gym class. But dyspraxia also impacted me in more subtle ways—folding paper planes and popping bubble gum, which are overlooked and often discouraged by the education system, but obvious rites of passage for anyone who has witnessed but not been able to participate. As an adolescent, my concerns shifted to applying cosmetics, walking in high heels, driving, manning a cash register, and other skills necessary to the work place, which continue to be a source of difficulty and stress for me.  

My difficulties with motor skills, coordination, and organization were compounded by other factors such as mishandling. Having been officially diagnosed as a toddler in an affluent community, I received all the early intervention services that were available during the early ‘90’s, so my consciousness of my disability was born in the therapist’s office. I understand that it is extremely selfish to complain to complain about receiving too much help, overly modified tasks and instructions, and excessive praise, seeing as others with similar profiles were neglected or seriously abused, but these really led me to doubt my own abilities. It became harder to justify my absence to other kids in elementary school when I disappeared from mainstream class for OT or PT, but had to internalize my own “defectiveness.” I isolated myself socially because I knew I was defective, and am still pretty much a loner out of habit. I was really angry with the education system for a long time and rebelled against any kind of intervention during high school. I’m still reluctant to seek help, and only in the past year I sought out assistance in the online community, I’ve been really pleasantly surprised that they emphasize empowerment. I’m really grateful for all that respect I’ve received from special educators and parents.

soundtrack saturday – january / february.

2015, well, like the end of 2014… It’s been a weird year so far. Here we are, nearing the end of February, and unlike how I ambitiously pounced onto soundtracking 2013 and 2014… This year has been much different. It’s like I started the year in either seven different directions, or none at all, and I still have no idea where I’m even attempting to go. Which feels pretty uncharacteristic for me, and I am not sure I really like it.

Which I suppose is why, we start the list of contenders here… with courage and control

Courage and Control – Brandon Boyd.

 

I thought I’d be on track again by the beginning of January. After the first couple weeks into the year, I found myself growing kind of despondent. I’d left 2014 with two of my descriptors—student and childcare assistant—lingering within it. It was a weird feeling, and not having a proper go-to-work job (or have “jobs”, but little/no work), left little to distract from those feelings as I often would do, also not having school to bury myself into.

The boulevard is bustling
A vast and wrinkled muselin
To hold over my eyes and
I know I don’t belong.
There is a noise inside of me
That bustles asymmetrically
Oh, how have I to balance
Those sounds into a song?

It’s time to let your hair down
and give yourself permission
It takes courage and control…
but you start by letting go.

Letting go is hard. Especially when your life is so absorbed in certain things/places/people, and suddenly, they are gone—basically fully, completely gone—and you’re left with thoughts rivalling both the moving part of a massive freeway and a gridlock.

The city’s an analogy
For things building inside of me
This chaos and this discourse
Still we move along.
But chaos sings of symmetry
And all her words are poetry
And that’s the kind of city
Which I want to belong

I know there are better places, things, opportunities ahead. Accepting that the present is what it is, though, and there is little I can do about it. Letting go is very much active, not passive. In January, I finally let go of many things.

All i think,
I feel,
I see.
Oh, that this place
it’s not me.
I want to belong,
but be wild and free

Oh, he who asks
receives. 

And gained others.

 

Of Men and Angels – The Rocket Summer

Around the time I met with Richard in January, this song was rather constantly buzzing its way around my head.

Stop the press, everything a mess
You can look alive, but you are not at rest
and i-ideas, are flowing through your head
a million miles an hour while lying in your bed
A lucid life you never thought you’d lead
Are you working every day, are you working just to bleed?
I know, I know, I know, I know, I know.

Right here, this can be what ADHD feels like. I’ve continued to embrace and grow in my ADHD diagnosis so far this year, and it’s been interesting (another post for another day :].)
This next part, of course, echoes back to the leaving bit of 2014… Because as much as we try, our past is part of us (and, I wouldn’t want that any other way, either).

[…] And feeling you deserve what you heard
But it doesn’t go that way

The rest… Enjoy the ride:

Oh, the tongues of men and angels
I speak like, love, oh love, will I stab you in the back?
Working every day, I forgot to show
What’s most important
—Love.

Here I am, dear Lord,
Tasting hints of fame
I don’t want it anymore
If it’s not You that I gain

Wanna fall at Your feet
Don’t wanna fall from Your peace
I understand.

Have you ever been the man that just ran
When you knew that God was talking?
Have you ever heard His voice through the noise
But just let it get away?

Oh, the tongues of men and angels
I speak like, love, oh love, will I stab you in the back?
How come I go with mine instead of Yours
when Yours is always right,
I’m sorry
, just pour into me
—Love.

A heart at rest is harder now
Don’t let it go away
Hard earn pay, or hard earned pain
Right now they’re just the same
What’s the use, why work so hard
When it’s not what you crave?

When what you need is love.

I also was part of a discussion where I watched a friend lose a friend just by the fact that the friend didn’t believe in accepting love in all forms. And, when discussing love and acceptance, and writing questions on what church is… well, it’s a hard dose of reality to swallow that this becomes the outcome far too often.
 

Blankest Year – Nada Surf.

What do you do when you’ve liberated yourself from thoughts that were dragging you down?

Oh, fuck it.
I’m gonna have a party.

might be a pretty appropriate response. I reflected on the shit—‘cause as unfortunate as it is, it’s part of me—

I had the blankest year,
I saw life turn into a TV show
It was totally weird
The person knew, I didn’t really know.

Time don’t move,
We’re the only ones who do.
Bending reason
‘Cause it’s all we hold on to.

And… I choose how to respond to it.
And grow

[…] But you don’t own me, I’d like to return this spell
‘Cause it’s not my size—
And your lies are so much bigger than my lies
And your ties are made of things that shouldn’t make ties

Oh fuck it,
I’m gonna have a party.

 

Crashin’ – Jack’s Mannequin.

I wanna hear some music,
Now that they’re driving us all underground
Not the radio music
Or their satellites singing this
In this town…
I wanna hear some music,
And with the rock stars, all flicker and fade
Pop radio music,
I’m a ghost overground on, on parade

Crashin’ is a song that really comes down to finding/losing/gaining/discovering identity. 

And even if your voice comes back again
Maybe there’ll be no one listening
And even if I find the strength to stand
It doesn’t mean I won’t go missing

And my world will come crashin’…

And maybe that’s what 2015 is supposed to teach me. That I am not the things I do, I am the things that I am. And even if I am able to do all those things, it doesn’t mean the world will give a shit. I am the reason that I will stay alive (The Energy, AudioVent). The people around me aren’t who I am—I am.

Wanna hear some music
I have been waiting down here for so long
Trying to write this big music

With your breath in my face
But now… but now you’re gone

And my whole world comes down, down
And the words, and all the water on this broken town
The freeway’s just like veins without a heart.
[…]

And even if my voice comes back again
Maybe there’ll be no one listening
And even if I find the strength to stand
It doesn’t mean I won’t go on
And even if your voice comes back again
Maybe there’ll be no one listening
And even if you find the strength to stand
It doesn’t mean you won’t go missing

And the world will come crashin’
And the words will come crashin’
And music comes crashin’
Down on me…
And the words will come crashin’
Down on me. So down on me.

Down on you. 

I’ll get down on myself. I’ll get down on the people around me. But eventually I’ll find my words, my voice, my meaning, my place… again.

 

As it’s only February… I struggle to anticipate how the rest of this year will take shape. And I’m excited about that, that for once, this blank slate can be a gift… because for once, I have a blank slate and can choose to expect nothing. All of these songs might not be in the final soundtrack of 2015… but they’re part of the now. Of course, telling myself that I can expect nothing and actually doing so are two different things… because society, this world, expects different of me, too.